Search: “Revlimid”

Revlimid, Darzalex and Dex

It’s been ages since I posted, but that’s because there’s been nothing new to report.

I recently began treatment with one of the new-ish monoclonal antibodies called Darzalex (daratumumab, aka dara).  In addition to Darzalex, I’m taking an older drug that I’ve used before, called Revlimid. Once a week, I take a 20mg dose of dexamethasone.

It had been a little more than 9 years since I had any treatment for myeloma. After a stem cell transplant in 2007, I had no need for treatment.  My disease stayed pretty stable for several years. Then, about 3 years ago, I began to relapse a little more noticeably. Finally, my doctor thought it was necessary to start treatment before I started to exhibit any symptoms. Only recently, my RBCs dipped below normal.

PomalystI’ve had two infusions of dara so far. the first one took several hours to complete because of an infusion reaction. My blood pressure shot up to 203/97 and I developed a wheeze. The treatment was stopped for a while, and then the infusion was resumed at a lower rate. I was at the clinic for almost 12 hours that day.  I’ll write more about that in a future post.

As for Revlimid, I had that in 2006. It did very little for me, but I’m on it because my insurance company won’t pay for Pomalyst. This is because the dara/pom combination is considered “off-label” use.  The price tag for Rev is about $11k per month, and Pom is about $13k per month. My clinic has billed about $45k for each infusion of dara.  It’s hard to imagine, really!

Another first for me is that I’ve had a port implanted to handle the frequent infusions. It was an outpatient procedure. I was in at 7:15 Friday morning and out by 10:30 am. There’s some discomfort, but it’s not terrible. The surgeon prescribed some norco tablets. He even gave me a prescription for a lidocaine gel to apply before port accesses to numb the area before the needle is inserted.

That’s it for me now.  I’ll provide some more details in future posts.

Revlimid: Possible Side Effects

This is from ePocrates

Common Reactions

back pain
peripheral edema
muscle cramps
dry skin
abdominal pain
peripheral neuropathy

Serious Reactions

severe birth defects
rash, severe
multiple organ failure


This is just a note for anyone searching for potential side effects of Revlimid. Revlimid can cause nausea. I notice that I feel ill for a few days while I’m off steroids. The steroids actually help with the nausea. Dr. P. says that they give dexamethasone as an anti-nausea drug, so that explains why I feel ok on the days I’m taking dex. He said that he has had a few patients with MDS on 10 mg Rev/day who have had to quit because of the nausea and GI trouble. He had one pt who lost 30 lbs.

$5250 a month for Revlimid?

A fellow listmember on the ACOR MM list has been in touch with Celgene quite a bit, to get her husband on the new drug, Revlimid. Those of us in the trials get the drug at no cost to ourselves, but when it’s approved for use with MM, we’ll have to pay (one way or another). I’m going to start an email campaign to let the media know about this. So far, I’ve only written to CNN and had no response. I know. I’m expecting too much.

CELG financial data

From K.M.:
Revlimid is available to MM patients off-label from pharmacies approved
by Celgene. Dave got his from Biologics in NC last month and I think
that the press release was adding another pharmacy to their list (maybe a
total of 3 now.) The problem is that they will charge your insurance (or
you if your insurance won’t pay) $15,000/month for the drug. This is
because each pill costs about $250 and they only have 5 mg and 10 mg
pills available commercially. (One Celgene manager told me that they
will have 25mg pills available when revlimid is approved for MM since
that is the standard MM dosage, so it will “only” be $250/day instead of
$750/day.) You may still be able to get the drug for free from the
Expanded Access Program which puts you in a clinical trial. Dave starts
on the EAP this week after having our insurance pay $15,000 for revlimid
last month. We, or our insurance co., won’t be paying anything for the
drug, but he has to adhere to the protocol of the trial.

I see Brrreeeport is still going strong.

Happy on Revlimid!

I managed to get onto the Revlimid trial with Decamethasone and this has been the BEST thing that has happened to me in 2 years (since my stem cell transplant)! After Velcade and then a very small special trial my monoclonal protein numbers took right off into the stratosphere! I was very worried. Then within 2 weeks of Revlimid they dropped in HALF! Yes 50%. Two weeks later they halved again! M count was down to less than 15 two weeks ago! I pray that this trend continues and that some maintenance diet will hold it at or close to zero soon. Aspirins seem to be a safe counter to the clotting worry – and given my choices, I am NOT worried about a clot given the gift this drug has given so far! What a fine Christmas gift! I only hope it works for all fellow Myelomians! The thought of Revlimid trial staying suspended is scary. Have not heard what the latest is from Celgene, FDA or anywhere else. Does anyone know what’s the current state?

Revlimid and dex might be the next step

Since I feel that the CNTO 328 trial is not working for me, I’ve been thinking about my next treatment step. I’m almost 100% sure that I want to enroll in the Multicenter, Open-Label, Single-Arm, Expanded Access Program For Lenalidomide Plus Dexamethasone In Previously Treated Subjects With Multiple Myeloma. It involves high dose dex, which isn’t very appealing to me. I’d have to take the dex at 40 mg a day for 4 days, with 4 days off, over a period of 16 weeks. That would be the longest I’ve ever been on high dose dex. Revlimid is supposed to be 50 to 100 times stronger than Thalomid, which I took back in 2003. Thalomid worked for me. I think it may have been more the dex though. My response slowed down after I went to just 40 mg dex a week. One thing I’m concerned about is that my MM seemed to have become resistant to dex. Will the high dose dex do more harm than good?

I just know that I need to choose another treatment. I’m weary of having to go for IV treatments, so the pills seem very convenient. I’m tired of being poked. It seems my veins are too. Each time I go, there are multiple attempts to get an IV going. I have one good vein on my left hand, and it has its scars.

FDA panel backs Celgene’s Revlimid

BOSTON — A Food and Drug Administration advisory panel has voted to recommend that the agency approve Celgene Corp.’s oncology drug Revlimid, the company said Wednesday.

By Val Brickates Kennedy, MarketWatch
Last Update: 1:19 PM ET Sept. 14, 2005

Trading in shares of Summit, N.J.-based Celgene was halted at $52.91
Wednesday morning, ahead of the meeting. Celgene is seeking to have the drug Revlimid approved for the treatment of transfusion-dependent anemia due to certain blood cancers known as myelodysplastic syndromes.

Although the panel’s vote is not a final decision, the FDA traditionally
abides by the recommendation of its expert panels.

Celgene said that the FDA is scheduled to formally rule on whether to
approve Revlimid by Oct. 7. The company already markets a version of thalidomide called Thalomid, for the treatment of leprosy, and Alkeran, a treatment for the cancer multiple myeloma.

Celegene REMS Has An App

It’s been a while since I took Pomalyst or Revlimid.  I used to have to make a call to Celgene to take a survey.  The purpose of the survey is just to make sure patients are aware of the safety concerns.  I just got a call from the cancer center pharmacy that I can pick up my pom prescription when I go in on Thursday, as long as I’ve completed my survey.  I searched for the online survey, and found out that they have an app now!  It will remind me when my next survey is due.

The starting dose for pom is 4 mg per day, for 21 days.  Since I’ve had it before, I already know there’s going to be a dose reduction in my future.